Big-hearted walkers raise funds for Halifax boy with rare medical condition to see health experts in America

Archie with his mum Patsy, Beverley and the Mixy Marchers.
Archie with his mum Patsy, Beverley and the Mixy Marchers.

Kind-hearted walkers have rallied round to help a Halifax boy with an almost unheard of condition meet medical experts in America.

Mixenden Marchers carried out a 10km sponsored walk on Sunday to raise money for Archie Beverley’s trip so that his family can find out more about Smith-Kingsmore syndrome.

Twelve-year-old Archie, who goes to Ravenscliffe High School, is one of only four people in the UK known to have the condition, and one of only 24 in the whole world.

The syndrome - only diagnosed last year - causes a catalogue of medical issues including developmental delay, complex learning difficulties, seizures, low muscle tone and limited sight .

The conference in America later this month is being held by doctors researching the incredibly rare condition who have invited Archie over so that they can create a profile that may help other sufferers.

His family also hope it will help them learn more about the gene, his prognosis and a potential drug trial.

His mum Patsy’s cousin, Mandy O’Shea, founded Mixy Marchers earlier this year and asked members if they wanted to help raise money for the trip.

She is also organising an evening of family entertainment at Moorside Club on Keighley Road in Ovenden on Saturday from 5pm to 10pm, also to raise funds.

The walking group is aimed at helping women to get out and open up to each other, and is proving a huge success.

“It’s a group for the ladies in Mixenden to get out of the house for an hour and have a chat,” said Mandy.

“It started off with me asking if anyone wanted to meet up and it’s taken off. We meet three times a week now.”

The group usually walk for around 90 minutes on different routes out of Mixenden.

Inspired by her mum, Mandy’s daughter has started a junior walking group for children aged eight and up which is also very popular.

”The kids love it,” said Mandy. “It’s getting out the house, with their parents, not on their mobile phones, talking to each other,”